Family and online support groups have helped along the way, said Christina, but she also credits Cincinnati Children’s services, such as the speech therapist who came to their home to work with Blayne one-on-one as he touched and sampled different foods.
Initially, the care team predicted that Blayne wouldn’t eat by mouth until he was 3 years old. But one day, when he was 17 months old, he picked up a french fry, dipped it in ranch dressing and popped it in his mouth.
“It was so awesome to see,” said Christina. “We would put food in front of him, so he could smell it and touch it and get used to it. But then it just happened one day. He took that french fry and ate it.”
Doing Well, Making Healthy Progress
Blayne’s primary GI doctor, Stephanie Oliveira, MD, CNSC, is very happy with his progress.
She notes that complications can sometimes happen for children with short gut syndrome. But given his early prognosis, Blayne is doing much better than expected.
“Kids like him typically present with several challenges including profuse diarrhea, poor weight gain and liver problems,” said Oliveira. “But Blayne loves to eat by mouth, does not have diarrhea, is growing beautifully and has a very healthy liver.”
As a patient who is still on IV nutrition, Blayne is seen every four to six weeks for checkups. He also participates in the remote patient monitoring program so his doctors can receive weekly data on him (such as weight and stool output).
“[Blayne] is fully potty trained, which is one of the hardest things to achieve as a short gut kid this early,” said Oliveira. “He is growing, thriving, developing and relying less on IV nutrition.”
Plus, eating and playing – each day from 11 am to 8 pm – completely disconnected from his IV line.
“He can run and jump and play, free of lines and tubes,” said Christina. “His trampoline is one of his favorite things to play on. He does front flips and all kinds of stuff.”
And while Blayne perfects his bouncing somersaults, his parents have become experts in his management at home. At night, his parents hook him up to three different pumps to administer his needed nutrition, fats and formula.
“It’s just natural now to hook him up at night and get all the meds and mix them up,” said Christina, describing their nightly routine. “You either do it or don’t do it. And in this case – to keep your child alive or not – we would do anything we could.”
(Published January 2022)